Wednesday +261 (Evening)

As posted earlier, we were released on Friday at about 5:00 PM. We were packed and on the road by 6:15 PM for an all night drive to Pryor. The weather was rain, drizzle and fog with a temperature of about 32 degrees until we reached the middle of Iowa. In Iowa the weather began to improve and we had clear sailing once past Kansas City. We arrived home at 4:00 AM. For those that don't already know I bought a plane to shorten this, now regular, commute. I will have it by the end of February. It is a Cirrus SR22-GTS. It will shorten the 10-11 hour commute to 2.5 hours.

Jackie has had some serious ups and downs since our return home. Even a house full of kids did little to help her at times. Today was a real struggle. She continues to have severe nausea and bone pain at times. She also continues to run a low-grade fever. Of course we have no idea why the fever still occurs. Today she had "10 of 10" bone pain and was not able to get off the bed/sofa until late afternoon. The pain pills are addictive and she is very hesitant to take them but at a certain point there is really no choice. The good news is that the pain meds are very effective. We continue to hope that whatever is causing the problem will eventually resolve. Of course this could still be related to the C-Diff problem but as time passes we must begin to consider other alternatives.

Until Later....


Bruce and Jackie
From Pryor

Friday +256 (Flash Update)

Well, they released Jackie. We will be leaving immediately to come home. We expect to arrive about 4:00 AM Saturday. No early phone calls PLEASE!

Until Later...

Bruce and Jackie
From Rochester, MN

Thursday +255 (Evening)

Just a quick note to say that Jackie felt good for much of the day. Her energy level is still low. We received the results of her blood tests this morning and her hemoglobin is even lower than yesterday. This explains her lack of energy. Her Hgl today was only 9.4. This is down from yesterday's 10.5 and 12.5 when we arrived. Her white blood cell count is still very good at 7.4 which is down from yesterday's 9.3 and the 25.1 when we arrived. Her neutrophils continue to be good at 5.07. Her platelets dropped from a record level of 243 to 199.

Jackie's temperature was normal or near normal for the entire day. If it stays low the possibility exists we could still be released tomorrow for a drive home on Friday night/Saturday morning.

The weather here turned out to be a non-event so far. Much to the consternation of the local folks there has been no snow - yet.

Until Later...

Bruce and Jackie
From Rochester, MN

Thursday +255 (Morning)

Just a quick note to let everyone know we will not be leaving today. It seems we will be here in Rochester for Xmas. Jackie's blood counts continue to improve. Her hemoglobin is low at 10.5. This is contributing to her lack of energy. Also the fact that her Prednisone dosage was reduced is another reason she doesn't have much energy. Her WBC count is very good at 9.1 and her platelets have skyrocketed to a new all-time high of 243. Her sodium level had risen to a near normal 133. So...she should be feeling fine; but of course she isn't.

Last night she spiked a temperature of 102. It remained at around 100 for most of the night and rose to 101 this morning. Her stomach has been "growling" at an unbelievable rate through most of this ordeal but it has recently settled down and seems more normal. Her appetite is still nearly non-existant, however.

So...we will continue to hang around Rochester until her fevers have subsided. We are supposed to get some snow and ice tonight so maybe WE will have a white Christmas.

Until Later...

Bruce and Jackie
From Rochester, MN

Wednesday +254 Early (Evening)

It is beginning to look like we won't be back for Christmas. Although Jackie is feeling a little better, she still has a high-grade fever at times. As I write this she has a fever of 102. This probably means she has an active infection somewhere and her body continues to try to fight it off. Of course we have no idea where the infection might be. Her stomach/gut/bowel is a likely area. My guess is that they will want to keep her until next week to see if the fever subsides on its own. If not, they will do a colonoscopy. So it is looking like it will be Christmas in Rochester - and it will be a white Christmas!

Until Later...


Bruce and Jackie
From Rochester, MN

Tuesday +253 (Evening) Still in Rochester

Well, we aren't headed home. Last night Jackie ran a fever of 102. This morning she still had a fever of 101.5. Today she ran a low-grade fever, but nothing high. As I write she has a fever of 100 degrees.

We spent the entire afternoon meeting with the doctors and they felt it would be best if Jackie stayed in Rochester for a few more days to see if her fever subsides.

She continues to do better and is eating a little better (but not a lot). They believe her fever is still related to the C-Diff. There is no other reason to believe there is any other problem. All of her tests continue to come back negative. The docs can tell us with near certainty all the things she DOESN'T have, they just can't tell us what she DOES have. For example, they know she did not contract Gardia by drinking unfiltered water from mountain streams or E. Coli from Taco Bell.

On Wednesday they will do another series of blood tests. On Thursday they will do a series of tests blood tests and a general exam. If the fevers have subsided we will probably be cleared to come home for Christmas. If not, we will see the doctor on Friday and they will want to schedule a colonoscopy to see if there is something else going on. The possibility exists she could still have CMV or GvHD in her stomach/gut/bowel. The peripheral blood tests for CMV are negative but it sometimes happens that the blood tests are negative yet CMV still exists. Of course GvHD is also a possibility.

They've asked that we go to the hospital if her temperature rises above 101.3 for blood cultures. It seems that the best time to get a culture is when the body's temperature is on the rise.

I suppose the good news is that the infectious disease doctor said that in BMT transplant patients fevers of unknown origin are fairly common and they often fail to find a reason for the elevated temperature.

So we may be cleared to come home on Thursday, just in time for the snowstorm that is due to develop on Wednesday and Thursday. Otherwise it looks like it will be Xmas in Rochester.

Until Later...

Bruce and Jackie
From Rochester, MN

Monday +252 (Evening)

Once again we spent the entire morning at the hospital. She had more blood work and cultures drawn. Jackie continues to make small amounts of improvement. Her stomach is better today. She is still having some pain in the stomach and gut, but it isn't as bad. She also continues to have pain in her lower back and hips. This is the bone pain she had dealt with for the past month. She ended up spending most of the day in bed. That is where she has been for the last week - in bed.

Jackie's blood counts continue to be good. Her hemoglobin (Hgl) is down a little to 10.3. A few days ago it was at 12.3. It is probably down a little due to the large amounts of blood that is being drawn for tests and because she has been receiving fluids. Still her energy level is clearly down and this is the likely reason. Her WBC count continues to be very good at 7.1 and has come down from the much higher levels of a week ago. This indicates the antibiotics are working on the C-Diff. Her platelets remain excellent at 208. Her sodium level is still 129, but I continue to salt everything she eats (much to her displeasure) and this should be normal again before long.

Today she said she felt like eating Mexican food so we went to one of the local TexMex restaurants. She was able to eat about 1/4 of a burrito. Not much, but still progress. This evening she said she felt like eating some California sushi-type rolls. So I began a search for sushi in Rochester. As you might imagine, sushi is not a big food item in the cornfields of MN. I finally located some at a Super Target store and she consumed a few for supper. My stock tip of the month: Buy TGT stock! Last night I went to Best Buy to purchase some software. They had a line a mile long to check out with only half the check registers open and employees standing around gabbing. I left the store and went across the street to the Super Target and bought my software with no wait whatsoever. They had 36 registers up and running. Today I found sushi there.

Tomorrow we find out if we will be released to come home. We won't know until about 5:00 or 6:00. I believe they will send us packing, however. They want as few souls around during the holidays as possible. My plan for returning home if we are released is to leave very early in the morning on Wednesday (about 3:00 AM). This will put me back in Pryor by 2:00 and ahead of the snow storm.

Until Later....

Bruce and Jackie
From Rochester, MN

Sunday +251 (Evening)

Once again, we spent the entire morning at the hospital. They ran more blood tests, took more samples, and concluded she should be healthy. Of course that isn't the case. She is still having bone pain and stomach pain. It is much better than a week ago, but far from OK. She is eating better, but not a lot. Tonight she said she was hungry which is a first in more than a week. Her mental state and balance are back to normal. Her sodium level is at 129; up from 123 (in the hospital at 120). Normal is 135-145.

Of most concern (at least to me) is the fact that she continues to run a fever much of the time. Most of the time it is low-grade (below 101.3), but last night it was at 102. Something must be causing this that hasn't been found. It could be the C-Diff, but I think there must be something else.

Jackie is really upset at the possibility of not being able to come home for XMAS. We will be back in the hospital tomorrow and our last doctor's appointment is at 5:00 PM on Tuesday. A big snow storm is headed for IA and MO on Wednesday. They are talking about blizzard conditions. If Jackie is released, I may end up driving all night on Tuesday in order to miss the snow storm. Of course this assumes the snow doesn't move in early.

With some luck the next two days will bring no new surprises and we will be home soon.

Until Later....

Bruce and Jackie
From Rochester,MN

Saturday +250 (Saturday Afternoon)

We've been at the hospital since 9:30 AM. It is now about 1:45 PM. They've done an abdominal X-ray as well as blood work. We are awaiting the results of both. Jackie has had some major pain today. Her back and stomach are really giving her lots of problems. Because they don't wish to slow down her digestive system they will not give her any of the usual pain medications. She can only have Tylenol.

Last night her stomach was so upset that her stomach rumblings actually woke me up. I would not have believed it possible for the digestive process to be so loud. This morning she had a severely distended stomach. In spite of all this she was literally able to choke down about 3/4 cup of oatmeal. At about 11:00 AM she was able to drink about 2 cups of soup broth. She is feeling a little better, but not much.

The good news is that her C-Diff tests are now registering as negative. HOPEFULLY this will allow her stomach and gut to heal from the toxins produced by the C-Diff and begin to heal and her general health will improve. The other good news is that her mental state has returned to normal. She is still a little unsteady on her feet, but it isn't too bad. She is also mentally much more aware. It seems these problems stemmed from the fact that she had an electrolyte imbalance.

Hopefully she is on the mend once again.

Until Later...

Bruce and Jackie
From Rochester, MN

Friday +249 (Evening)

Today was a long day. We began at about 7:00 AM and had hospital or doctor visits for most of the day. They conducted more blood tests, they performed another head CT scan, and she received a unit of fluids and another unit of sodium. They switched her C-Diff treatment from Flagyl to Vancomycin to eliminate the possibility that the Flagyl was causing her altered mental state.

So here is what we know...It seems she has an electrolyte imbalance. Her sodium is low. This is called hyponatremia. A normal level for her would be about 135. When we arrived here here level was 127. Today her level was 123. At 120 you get admitted to the hospital. Why is her sodium level low? Fortunately this is an easy answer. She has not been eating anything for more than a week. She has, however, been given IV fluids and has (on her own) consumed large quantities of water. This causes her to have an imbalance between her "free water" and the sodium in her body. The cure? Naturally to not drink as much water and to eat regular foods. Once the C-Diff gets under control this shouldn't be an issue.

Jackie felt really bad for most of the day. The IV fluid made her feel a bit better this morning but as the day went along she worsened. By late afternoon she needed a pain pill. I'm not certain if it was the pain pill or the IV sodium she received but she seems to be improved this evening. Her cognitive functions seem to be improved and she managed to eat some solid food (that I cooked - now THAT'S amazing) this evening.

We report to the hospital for checkup on both Saturday and Sunday. On Monday we meet with some of the doctors to plot the next course of action. If she hasn't improved over the weekend they will likely want to do both a spinal tap and a colonoscopy. If she has improved we will meet with the transplant doctor for a final visit on late Tuesday. If she is doing well she will be able to come home. If not....well it could be Christmas in Rochester.

I really think she is making small amounts of progress. Her white cell count seems to be responding to the new antibiotics and after talking to the infectious disease doctor today I found that even a single dose of Bactrim, which is a strong antibiotic can cause patients with C-Diff to relapse. Jackie normally takes a breathing treatment (Pentamidine) once per month to guard against lung infections and problems. Since we had not been here at the Mayo Clinic in over a month she could not get the treatment. We checked about doing the treatment in Tulsa but when asked the doctors in Tulsa basically said, "What's Pentamidine and why would you do that?" So Jackie called the Mayo and they put her on a prophylactic dose of Bactrim. This happened about 4 or 5 days before she got really sick. It is MY opinion that she already had C-Diff and her body was producing white cells and neutrophils at a prodigious rate that caused her to have the extreme bone pain of a few weeks ago. She was probably doing a fair job of battling the C-Diff and then.... she took the Bactrim and the C-Diff really flourished and her system was overwhelmed. So now she is off all antibiotics (except Vancomycin to treat the C-Diff) and she took a Pentamidine treatment yesterday. They will taper her Vancomycin over about a 6 week period. They've found this is more effective in treating patients with C-Diff relapse. They also have some other treatments as well. Once of these involves implanting donor fecal material into the recipient's gut in order to repopulate the growth of gut flora. Jackie is SURE hoping the Vancomycin works:) This is a transplant nobody could would want!

Until Later...

Bruce and Jackie
From Rochester, MN

Friday +249 (Noon)

Just a quick update...

I forgot to post anything to the blog last night and we've been at the hospital since 7:00 AM today. Jackie required another unit of fluids this morning. She is still not feeling well at all. In fact, she now has an altered mental state and some substantial dizziness. She is tired and sleepy. They are going to do more CTs and MRIs of her head today. If things don't improve they will do a spinal tap next week to check for any viral infection. They are also checking for thyroid levels. We are definitely here until next week.

The good news is that her counts are VERY good. In fact, they are near perfect. Her platelets are at 280, her Hgl is at 12.1, her WBC count is above 8.0 with excellent neutrophil counts. She SHOULD be feeling better! She continues to run a low-grade fever, but hopefully this is as a result of the C-Diff. We will be meeting with the infectious disease doctor in a few minutes.

The other good news is that her bone marrow tests show no indicatons of CLL at all! In fact, it looks perfectly normal. It showed an elevated level of white blood cells, but this is expected given the fact she has an infection/fever. They still have one test that is not available, but they expect no surprises.

Until Later...

Bruce and Jackie
From Rochester, MN

Wednesday +247 (Evening)

Jackie didn't see much improvement today. She continues to have a lot of gastrointestinal distress. She is eating almost nothing (maybe 3-400 calories per day). She did seem a little less nauseated today. However she was dizzy and disoriented at times. We have no idea why. The dizziness might have been due to the fact that she used a Scopolamine patch for nausea. The doctor had her remove it as soon as he found out she had used one. Scopolamine is typically used for motion/sea sickness and she used the transdermal patch without anyone knowing she had done so.

We met with the doctor today. He also feels that much of her current distress stems from the C-Diff flare. For this reason he decided to temporarily discontinue all antibiotics other than the Flagyl that is being used to fight the C-Diff. They will also give her a longer course of Flagyl to try and completely clear the bacteria.

The results of the bone marrow biopsy were not available today. We will meet with the doctor again on Friday to obtain the results. Her CT scans (head and abdomen) were good and she showed improvement in her lungs from the pneumonia of several months ago. Her chest X-ray was also OK.

So...hopefully the Flagyl will kick in and take care of the C-Diff problem. I think by tomorrow we may see some improvement. With some luck we might be home as early as Saturday.

Until Later....

Bruce and Jackie
From Rochester, MN

Tuesday +246 (Evening)

Today saw very little improvement in Jackie's condition. In fact this morning she was worse than yesterday. She was severely dehydrated. Last night she had a fever of almost 103.

She was scheduled for a bone marrow biopsy early this morning. When we arrived her heart rate and blood pressure were high and they immediately began giving her IV fluids. They gave her a liter before the procedure and another liter after. She had a bilateral bone marrow biopsy which resulted in two holes being poked in her hips instead of the usual one.

After receiving the fluids she felt better and her blood pressure and heart rate returned to normal. She is still finding it impossible to eat anything. Due to the C-Diff her stomach is very upset and anything she eats or drinks causes instant pain and nausea. It is as bad as after the transplant. Don't bother sending suggestions for foods she might be able to eat. I've heard them all. I went to the grocery store and bought all the usual candidates for eating while dealing with upset stomach. When she gets like this there isn't much that can be done until the meds take effect and begin to get the C-Diff under control. It usually takes 3-4 days. I'm hoping by tomorrow she will begin to get some relief. This evening I THINK I can detect some minor improvement.

We meet with the transplant doctor (Dr. Hogan) tomorrow afternoon. He should have some preliminary results from the bone marrow biopsy as well as results from the CT scans. I think if there were anything significant on the CT scans we would have received a call from one of the PA/RN transplant coordinators.

Technical: For all the CLL patients who are reading this blog there are some clues here that might be helpful as you go through a transplant. It is an after-the-fact analysis of what we did wrong with regard to the current C-Diff episode.

We missed the fact that Jackie had another bout of C-Diff. Although she had dealt with the problem several times before, we (and the docs) should have suspected C-Diff. We thought she was having some gastric distress due to GvHD in the stomach and gut. I don't believe this was ever the case. Initial tests from stool samples were negative for C-Diff. This in spite of the fact that there were clear signs of an active C-Diff flare. As it turns out there are a couple of different assay tests for C-Diff; some less accurate than others. It is also possible the diagnosis was missed due to the fact that the sample was not "fresh". Samples were FedEx'd to Rochester from Tulsa.

This event happened as she moved to a once-a-day dose of 25 mg of Cyclosporine. As I mentioned we suspected GvHD. We increased her Cyclosporine and Prednisone dosage to the prior level (50 mg/day and 10 mg/day respectively). This was probably a mistake. The goal is to get to a level of zero on all dosages and get her immune system ready to deal with minor problems without the need for antibiotic, antifungal, etc. prophylaxis. It is the antibiotic prophylaxis that causes the gut to not be able to repel the C-Diff invasion. If she can get to a level of stasis the normal gut flora should be able to crowd out C-Diff that causes the problem. So the lesson is that sometimes the simple answer is the correct answer (Occam's Razor). The good news through all this is that it appear that her immune system has managed to mount a robust defense to the perceived threat from the C-Diff flare-up. Her latest CBC showed a slightly lower level of WBCs and a lower ANC with good counts for RBC and Hgl with stable platelets.

Until Later...

Bruce and Jackie
From Rochester, MN

Monday +245 (Evening) From Rochester

Jackie was miserable today. On a scale of 1 to 10 she was about a 3 today. She continued to have nausea and abdominal distress. Of course all this and she was forced to: A. Give blood for a CBC; B. Do a head CT scan; C. Do a full body CT scan. So it wasn't her best day. The good news is that we know part of the reason she is feeling bad. She is again positive for C-Diff (Clostridium Difficile...want to know more? http://www.cdiffsupport.com/aboutcdiff.html). This is likely the cause of much of her gastrointestinal difficulty. It could also explain the fever, certainly the nausea, and possibly the high WBC count.

Today her fever ran to almost 103 at times. Due to the fact that her WBC count and ANC level is very high the docs elected to let her immune system fight off whatever bugs might be causing the fever/possible infection. At least to me this seems like a good sign they feel her system is finally developing to the point where it can handle routine problems without help from IV antibiotics, pills, and various and sundry other noxious potions and incantations!

Tomorrow morning she will have a bone marrow biopsy. She has had several of these before and they can be somewhat painful after the event. So...I until the effects of the biopsy and the C-Diff meds kick in I think she will continue to feel lousy. I think by the end of the week she will begin to show good progress, however.

Until Later....

Bruce and Jackie
From Rochester, MN

Sunday +244 (Evening) Back in Rochester

Well....we are back in sunny Rochester. Actually the only snow we saw was in OK and KS on the way up. There is no snow here in Rochester; although the Zumbo River that runs through Rochester is frozen solid.

Over the last 10 days or so Jackie has been running a low-grade fever. It has ranged upwards to about 100 degrees. She has also had some nausea and stomach cramps. The most troubling problem has been very intense bone pain. The bone pain has been quite severe and required the use of some very strong pain medications.

Yesterday (Saturday the 9th) Jackie spike a fever of over 102 degrees. The official Mayo cutoff for ignoring a fever is 101.3. Jackie phoned the good folks at Mayo and they suggested she get a CBC and chest X-ray locally. We called the Radiology Department in Pryor and nobody answered the phone. In Tulsa the zoo they call the ER would have been a multi-hour wait to get a CBC and X-ray so we hopped in the car and made the 10.5 hour drive to MN. We arrived about 11:00 PM. We walked into the hospital where the nurses said, "We've been expecting you!" They had blood drawn within 20 minutes of arrival. We met with her doctor this morning and she had a chest X-ray after our meeting.

Jackie's white blood cell counts have gone from 3400 about 10 days ago with a neutrophil count of 1900 to over 25,000 with neutrophils of over 20,000 today. This doctors have no idea why this has happened. It could be the result of an infection, etc. They feel there is no reason to believe it is a reactivation of her CLL. However they plan on performing a CT scan and bone marrow biopsy to make certain that her lymph nodes and marrow are acting normally.

The rest of Jackie's counts are doing great! Her hemoglobin is 12.3 so her energy level is good. Her platelets are 217.

So, as always when in Rochester I will be updating the blog much more frequently (probably one a day or whenever the information changes).

Bruce and Jackie
From Rochester

Wednesday +240 (Evening)

Jackie has not felt well for the past week. She has been plagued by some severe bone/muscle pain as well as nausea and stomach cramps. She has not run any fevers over the last week. Her fever of a week ago was likely due to the fact that she was once again neutropenic.

On Monday of this week she received another blood test. It was the best test in several years. Almost all of her counts were in the completely normal range! Her hemoglobin was in the low 12s. Her WBC count was 4.8 with a high neutrophil count. Her platelets were 208. The few blood components that were abnormal were only abnormal by a small amount.

For this reason it makes it strange that she doesn't feel well. She had another CMV test which was negative. It is my belief that she is experiencing some GvHD problems. Her Cycolsporine anti-rejection medication had been reduced to only 25 mg per day. Her Prednisone dosage had also been reduced to a very low level.

After consulting with the good folks at the Mayo Clinic the decision was made to increase her Prednisone dosage by a small amount. I think it may also be necessary to increase the anti-rejection meds slightly and then begin a slower tapering procedure. If her condition fails to improve we may need to make a trip to Rochester.

Until later...

Bruce and Jackie
From Pryor