Thursday +171 (Evening)

Just a quick note to mention that we received a good report from the doctor today. It seems her lung CT show "marked" improvement. This is due to the Prednisone. We will meet with the pulmonary doctor tomorrow. He will decide if we should begin to taper the Prednisone. They would like to get her off the steroids as soon as possible. It is likely she could have a reactivation of her CMV virus while on the Prednisone. For this reason she will need to be tested weekly for reactivation. The Herpes (no it is not the STD one!) has improved as well. The PA made the remark that it seems every transplant patient has to deal with Herpes reactivation at some point. From what I can gather they feel Jackie is lucky the outbreak was in her mouth and on her gums. It seem most patients experience the Herpes zoster (Shingles) form which is often very painful.

Jackie's blood test have improved for the most part. Her RBC (Hgl) is 10.9. This is still below normal, but an improvement from several weeks ago when she required two units of whole blood to maintain her above the Mayo threshold of 8.0. Jackie's WBC count was a respectable 3.2 with a lowered ANC of 1.46. The 1.46 is still OK, but down from a previous 2.3. Her platelet have risen to a stellar 170! This is within normal ranges and such a relief from the level of one year ago. One year ago this number would have been below 30. Eleven months ago it was at 2

Yesterday was one of the few days when she reported feeling "normal" again. There have been only a couple of these over the last few months so it is always nice when that happens. Hopefully the number of "I feel normal" days will increase as time goes by.

Until Later...


Bruce and jackie
From Rochester, MN

Thursday +171 (Evening)

Just a quick note to mention that we received a good report from the doctor today. It seems her lung CT show "marked" improvement. This is due to the Prednisone. We will meet with the pulmonary doctor tomorrow. He will decide if we should begin to taper the Prednisone. They would like to get her off the steroids as soon as possible. It is likely she could have a reactivation of her CMV virus while on the Prednisone. For this reason she will need to be tested weekly for reactivation. The Herpes (no it is not the STD one!) has improved as well. The PA made the remark that it seems every transplant patient has to deal with Herpes reactivation at some point. From what I can gather they feel Jackie is lucky the outbreak was in her mouth and on her gums. It seem most patients experience the Herpes zoster (Shingles) form which is often very painful.

Jackie's blood test have improved for the most part. Her RBC (Hgl) is 10.9. This is still below normal, but an improvement from several weeks ago when she required two units of whole blood to maintain her above the Mayo threshold of 8.0. Jackie's WBC count was a respectable 3.2 with a lowered ANC of 1.46. The 1.46 is still OK, but down from a previous 2.3. Her platelet have risen to a stellar 170! This is within normal ranges and such a relief from the level of one year ago. One year ago this number would have been below 30. Eleven months ago it was at 2

Yesterday was one of the few days when she reported feeling "normal" again. There have been only a couple of these over the last few months so it is always nice when that happens. Hopefully the number of "I feel normal" days will increase as time goes by.

Until Later...


Bruce and jackie
From Rochester, MN

Monday +168 (Evening)

Just a quick update to let everyone know that Jackie seems to be doing well with her pneumonia. Unfortunately she has had a Herpes viral flair. There are several types of Herpes Simplex. If you've ever had Chicken Pox then you've had Herpes. People with compromised immune systems are subject to Herpes outbreaks. These usually present as Shingles. In her case it was present in her mouth and sinus cavity. It has caused a lot of pain. They have prescribed some heavy-duty anti viral drugs that should knock the flair up down quickly.

We will be heading back to the Mayo Clinic on Wednesday. We will return on Saturday. They will be following up on her pneumonia and Herpes.

Until later...

Bruce and jackie
From Pryor

Monday +161 (Afternoon2)

Jackie is finally free of the hospital. We are scheduled to return for checkup in 10 days. We will leave for Pryor on Tuesday.

Until later,

Bruce and Jackie
From Rochester, MN

Monday +161 (Afternoon)

They are releasing Jackie today. We are still awaiting detail, but it seems like they will release her for about a week with a follow up visit back her at Mayo in 7-10 days.

Due to my cold I haven't visited her at the hospital. She tell me that her counts have improved. Her RBC (Hgl) is now 9.9. Her WBC count is 3.3. and her platelets have moved up to an outstanding 173. She tells me she no longer is experiencing any blood in her stools. So things are better.

I'll post more as the info becomes available.

Until laster...


Bruce and Jackie
From Rochester, MN

Sunday +160 (Evening)

I didn't visit jackie today due to my cold. Fortunately it seems to be getting better. Jackie is feeling fairly well. She has encountered another problem. She is having some blood in her stool. This could be caused by a C-diff infection; but doesn't seem likely. They believe it is due to the high doses of Prednisone. They are monitoring the situation.

Until later....


Bruce and Jackie
From Rochester, MN

Sunday +160 (Evening)

I didn't visit jackie today due to my cold. Fortunately it seems to be getting better. Jackie is feeling fairly well. She has encountered another problem. She is having some blood in her stool. This could be caused by a C-diff infection; but doesn't seem likely. They believe it is due to the high doses of Prednisone. They are monitoring the situation.

Until later....


Bruce and Jackie
From Rochester, MN

Sunday +160 (noon)

Jackie will not be released today from the hospital. They wish to continue to observe her. Her creatine levels are still high; likely as a result of some of the IV meds she has received. They are continuing to give her IV saline flushes to clear her kidneys. Her hemoglobin levels continue to be a problem. I believe she told me the level was 9.1. In the past she has been able to maintain a level in the 10s. Her WBC count is back up a bit to 3.5. Her platelet have recovered nicely to the 160s.

I continue to battle a cold. I was only at the hospital a short while yesterday. I will not visit today. I will need to be non-contageous before I can subject her to a confined car ride for 10 hours. My cold seems to be better so hopefully by tomorrow I will be well once again.

Until Later...

Bruce and Jackie
From Rochester, MN

Saturday +159 (Evening)

They did not release Jackie today. They felt it best to observe her for at least another 24 hours due the type of IV drugs that were administered. She will probably be released on Sunday. I am not certain how long they will want her to remain in Rochester for observation.

In reading about her condition it seems that Prednisone usually cures the problem quickly. In most cases in 12-48 hours. The problem is classed as a type of pneumonia.

I did not spend much time at the hospital today. It seems I am coming down with a cold/flu:( I'm not certain how we will avoid contact, but I will have to be VERY careful when she returns. Fortunately my cold has not gotten bad and feels like it could be of the 24 hour variety.

Until later....

Bruce and Jackie
From Rochester, MN

Saturday +159 (Morning)

I just spoke with the doctor this morning. They feel Jackie's situation is likely GvHD. So far there has been no positive result for a parasitic infection. It seems in certain cases GvHD can elevate the eosinophil level. The treatment is, of course, Prednisone or steroids.

With the current diagnosis in hand they plan on discontinuing all of her IVs probably today. They want to observe her in the hospital over the weekend but are planning for a release on Monday. They may want us to stay within the area for some time so they can more closely monitor her. That has yet to be determined.

I have either allergies or I am coming down with a cold. It is too early to know which one. So I am being VERY careful to not come in contact with jackie. While in the room I wear a surgical mask and use the hospital hand sanitizer dozens of times per day.

Until later....

Bruce and Jackie
From Rochester, MN

Friday +158 (Evening)

Tonight Jackie received what should be her last round of "anti" IVs. At one time they had 5 bags of noxious IV solutions running into to IV lines. The anti-fungal solution made her very sick (as it did last night). They had to give her a shot of Demerol before they could continue. This, in addition to her premed Benydryl, made her very sleepy. Between the two drugs it managed to counteract the Prednisone.

She is still having a great deal of difficulty eating. She is nauseated and nothing appeals to her. The Prednisone may increase her appetite so maybe this will help her with her eating.

Until later....

Bruce and jackie
From Rochester, MN

Friday +158 (Late afternoon Update 2)

The news continues to be good. We just spoke with the doctor again. They feel certain there are no pneumonias, either bacterial or fungal. They also feel she is not dealing with GvHD - although this is still a possibility. They are going to continue the IV stuff for another 1/2 day or so just to make certain nothing is growing. It seem her eosinophil cell levels are elevated in her lungs. What is this? Eosinophils are white blood cells that are used for fighting infection by parasites. The parasite that could be causing the problem is quite frequent in Mexico, South America, and the tropics. They asked if we had ever been in any of these areas. Of course we used to sail in the tropics so the answer is "yes". Jackie has also been to Cancun. They are running some tests to see if this could be the cause. If so, there are drugs to fight the parasite. It seems that the parasite can remain dormant for many years and reappear when the immune system is compromised. So BINGO. The treatment in the short term will be oral Prednisone. So the news seems to be getting better. They just gave Jackie a big dose of Prednisone. She will likely be running laps around the floor most of the night. Feel free to call in the middle of the night. I'm certain she will still be awake:)

Thank goodness we came to Rochester. This sort of thing could NEVER in a million years been determined in Tulsa.

Until Later....

Bruce and Jackie
From Rochester

Friday +158 (Late afternoon)

Just a quick note to let everyone know that all cultures and smears from yesterday's biopsy are still negative for fungal infection. All signs point toward GvHD. They will begin Prednisone today. In checking, it seems it takes a bit of time before the steroids "kick in" and begin to bring GvHD under control. It may be a week before we see much improvement. Of course Prednisone also lowers blood counts, so the cycle can be never-ending. Again, walking the sword.

The good news is that what she has in her lungs is apparently not fungal. This is good news as fungal infections can be very difficult to treat. Of the several potential problems, this is (hopefully) the best problem to have.

I will post more as we know more...

Until later....


Bruce and Jackie
From Rochester, MN

Friday +158 (Noon)

We have today's blood counts for Jackie. Her RBC (Hlg) level has dropped below acceptable levels. Her RBC (Hgl) is now at 7.9. For this reason they are infusing 2 units of whole blood. Below 8 requires transfusion. Her WBC count continues to drop slowly. It is currently at 3.7. Her platelets are also taking a hit. They have dropped to 128. Her platelets and WBC counts are still within acceptable limits. They would transfuse platelets if they were to drop below 20.

The fresh blood should give her more energy and help her to feel better.

Should anything change I will post the changes immediately.

Until later...

Bruce and Jackie
From Rochester,MN

Friday +158 (Morning)

The doctor just left the room and we have no news - which is good news. Her cultures are all still negative and as I mentioned yesterday her smears are negative for fungus. So far she is still negative for CMV. If she were positive it would have likely presented in the culture by now. So what is the problem?

The current thinking is that she is facing some GvHD in the lungs. This is very common. It can be very serious, but usually it is manageable and treatable. If she still has negative cultures by tomorrow they will begin to treat her for GvHD. Treatment for GvHD will consist of steroids; probably oral. Steroids are a very effective treatment for GvHD. Of course long term usage is not good. If she does have GvHD it can (a) get worse; (b) stay the same; (c) improve. Only time will tell which will be the case. To date, Jackie has not presented any symptoms of GvHD which is somewhat unusual. Usually if GvHD is present, some sort of skin rash is also present.

It is only supposition on my part but I would think if the diagnosis is GvHD they will begin treating her with Prednisone. My guess is they would want to wait several days to a week and get another CT scan. If she improves they would release her, but continue to monitor her progress. One of the problems with steroids is that it can quickly decrease blood counts. Of course we all know what that means. As always, the choices will mean walking the edge of the sword.

We were encouraged by the doctor's report this morning. We've had this guy before and his bedside manner is the best in the hospital. He reassured us that the decision to admit Jackie was more related to Mayo Staff coordination than her general health. Since they didn't know what they were dealing with they wanted to make certain any problems were dealt with BEFORE the weekend. This is the sort of thing that would never be considered in Tulsa.

Jackie is actually feeling quite well. She still has a low-grade fever (100.1 5 minutes ago). Intermission: the infectious disease doc just came in.

The infectious disease doctor again confirmed that cultures were still negative. If Jackie had a bacterial infection it would likely have turned up by now. If she has a fungal infection cultures wouldn't turn positive until later today or tomorrow. They will continue to treat her to cover every possible contingency.

To continue, Jackie is feeling well. She is up, active, and currently eating breakfast.

So, I guess no news is good news. I'll update as soon as I know more.

Until Later...

Bruce and Jackie
From Rochester, MN

Thursday +157 (Evening)

Not much to report. We did get some preliminary results from the biopsy. The "smears" were negative for a fungal infection and for a bacterial infection. The infection could still be fungal or viral, however. The cultures are not back yet. They will require 12-48 hours to get results. Also we have no result on CMV.

A couple of pulmonary docs were in and they are beginning to treat her for a fungal infection. They are giving her several new IV anti-fungals and antibiotics. They have two IVs running at once. They tried to start a second IV line in her arm so they can add a third IV, but were not able to find a vein. She's been stuck so many times in the last two or three days it's terrible. I think we are both looking forward to a new central line.

They are waiting on a central line to see if whatever is causing the infection can be treated by oral medication. If, by some stroke of luck, she can be treated orally there will be no need for a central line. The only problem is she will still need to be stuck once or twice a day for blood draws, etc.

Other than lack of energy, Jackie actually feels reasonably well. Her fever continues to be low-grade. With the exception of her Hemoglobin, her blood counts continue to be good. Her RBC (Hgl) is down to only 9.1. This would explain her lack of energy. Her WBC count is 3.9 which is down a bit but still very respectable. Her platelets are at a great 152.

Hopefully the drugs will be quick acting and the stay will be short. Hopefully!

As I write, a second IV nurse is attempting to get an IV in her hand. The first nurse stuck her twice and missed both times. One of the sticks nicked a vein. The current nurse is the "expert". She just hit a vein on the first stick. So now she will receive a new IV drug. They are currently using Levaquin. I've not heard of the new drug. It has a very long name that even the docs seem to have difficulty in pronouncing.

Until Later...

Bruce and Jackie
From Rochester, MN

Thursday +157 (Afternoon)

A quick note to let everyone know that we have met with several of the "lung" doctors. It seems Jackie has "a significant atypical infiltration" in her lungs that has occurred over the last 6 weeks since her last CT scan. They have taken her for a lung biopsy. The original plan was for bronchoscopy only. The pulmonary docs wanted a biopsy.

It does not appear she has a simple pneumonia. The infiltration is within the small air sacs. She is not coughing significantly. She is only running a low-grade fever and has some shortness of breath.

There are several possibilities for her problem. It could be CMV (cytomegalovirus). This was the virus she had that required 6 weeks of IV anti-viral treatments. She was treated with 2 and 3 times per day ganicyclovir. The problem with this drug is that it can quickly deplete blood counts.

The other possibility is that the infection is fungal. Hopefully the biopsy will tell us more. In any case it seems her condition is more serious than first thought and we will likely be here longer than originally thought.

In my last post, I said it would be good if she received some calls. She is very depressed and upset by this latest turn of events. However that may not be a good thing tonight as I'm sure she will be groggy and sore from today's procedure. Feel free to call tomorrow, however. If she doesn't answer it likely means she either doesn't want to talk or she is busy with a doctor or nurse. If she feels like returning calls she will.

I will probably post again tonight. I believe we will have some preliminary results from the biopsy by early evening.

Until later....

Bruce and Jackie
From Rochester

Thursday +156 (Morning)

Well, they admitted Jackie to the hospital this morning. As I have done in the past I will update the blog several times per day.

She was admitted more for the convenience of the staff and doctors than because of her health. They felt it would be best if they could have the various team members see her more frequently. They also want to make certain they stay on top of her situation. Last night her fever was again elevated. It reached 101.7.

The CT scan revealed she has some type of inclusions/infiltrations in her lungs. They feel it could be a pneumonia or a fungal infection. It is likely they will do a bronchoscopy to determine what is going on. The standard course of treatment for this situation is 2 weeks of IV antibiotics. In order to keep from being "stuck" so frequently and so they will have access to her veins they will insert another central line catheter. This will be a PIC catheter. It will be inserted in the crook of her arm but will travel up her arm to a major vein or artery. It is much less invasive than her past catheter.

Naturally Jackie is very disappointed and upset by the prospect of spending the next two weeks back in the hospital. She feels as if she is back in prison. Unlike before, if anyone would like to give her a call to cheer her up it would probably be a good idea. Although she doesn't have a lot of energy I think she would like to hear from her friends.

Until later....


Bruce and Jackie
From Rochester, MN

Wednesday +155 (Morning)

Jackie had her second IV antibiotic treatment this morning. She has a CT scan at 1:30 today. Tomorrow she has a battery of doctor visits. We will be seeing the Infectious Disease team and the Pulmonary Specialist Team. Depending upon what is found in the CT scan her course of treatment could last as long as 10 days. We have an appointment with her normal BMT doctor on Friday. It appears the earliest we could be back home would be this weekend. This would only happen if her fevers resolved and they could switch to an oral antibiotic.

Her cultures still continue to come back negative. I don't think they will find anything in her blood culture. Anything serious would have already cultured. Her urine culture was indeterminate. Stool cultures are pending. It is possible she could be positive for C-diff or CMV. CMV (which she had before) would seem unlikely.

They continue to find a small amount of fluid in her lungs. She also has a minor cough. In my opinion they will likely find she has/had the beginnings of pneumonia. Whatever is wrong, it doesn't seem to be getting worse. She continues to run a very low-grade fever. In the last 24 hours it has been below 100 degrees. It has been normal or below normal several times. Of course they take any fever very seriously due to her immunosuppressed condition. She continues to have a serious lack of energy. She was barely able to walk back to the apartment after this mornings IV treatment. This is likely due to her decreased hemoglobin (Hgl) level. It was 9.4 a few days ago.

We also learned today that the lady I've mentioned in the past, Lisa Kleeman did not survive her third transplant. She passed away about 2 weeks ago. Naturally Jackie was depressed by the news.

Until later....

Bruce and Jackie
From Rochester

Tuesday +154 (Back in Rochester) Evening

Today Jackie received a battery of tests to see what might be causing her fevers. She received a chest X-ray and they collected various samples for culture. So far, her blood cultures continue to be negative. Her chest X-ray showed a potential area that could be the beginnings of pneumonia. For this reason they began treating her with twice-a-day IV antibiotics (Cefepime). We are not certain how long these will continue. I suppose until she no longer has any fever and until the X-rays and/or CT scans show no areas of concern.

Tomorrow she will have a CT scan. This will probably confirm or dispel the pneumonia diagnosis. Jackie continues to run a low-grade fever. It was 102.7 this morning when she awoke, but the remainder of the day remained below 100. Due to her low hemoglobin her energy level has been very low. She was in bed or on the sofa most of the day. The trip to the various appointments sapped her energy level for the entire day.

We will be back at our old haunt, Station 94, BMT Center, St. Marys at 8:00 AM tomorrow morning. The nurses still remember us, although they don't immediately remember our names. To them we seem like old friends returning for a visit. To us it seems like our jailers welcoming us back to prison! But it is what we have to do...

Until later....

Bruce and Jackie
From Rochester.

Tuesday +154 (Back in Rochester)

Well, we are back in Rochester! After returning home to OK on Saturday, Jackie began running a fever within 4 hours of returning home. It was a low-grade fever through Saturday night into Sunday. On Sunday night it worsened and at 3:00 AM it rose to 101.9. At that point the decision was made to return to Rochester. We were on the road by 4:00 AM and arrived in MN by 2:30 PM.

Upon arrival Jackie's temperature was entirely normal. The head of the BMT unit was in the office and decided to check her out anyway. In listening to her lungs he thought he heard a slight crackle. He ordered a CT scan for her. The earliest available slot was on Wednesday at 1:30 PM We are up at 5:00 again in hopes we can get in for a very early slot today. Since our visit yesterday with the doctor, Jackie has began to cough. There is a slight tinge to her sputum. So, it won't be surprising if they find something in her system. This morning as I write her temperature was 102.4. So our decision to come here seems to be the correct one.

Somewhat surprising were her counts. Her RBC (Hgl) count had fallen to 9.4. The docs said this could have been in reaction to her fever. Her WBC count had risen to a normal range of 4.3 with ANC of 1.65. Of course this could have also been partially in response to an infection/fever. It shows that her new immune system is mounting a good, healthy response to whatever is taking place. Her platelets had also risen to normal levels at 163. One might have expected these to be reduced due to fever/infection.

As we are back in Rochester, I will post at least once per day and more if needed.

Until later...


Bruce and Jackie
From Rochester

Friday +150 (Evening) From Rochester

The day began early with blood tests at 7:00 AM. Then Jackie had a Pentamadine breathing treatment at 10:00. Finally we met with the BMT nurse coordinator and doctor beginning at 1:00 PM.

Jackie's blood tests were good. We had mixed results from last week. Her RBC (Hgl) was down a bit to 10.3 from last week's 11.3. Her WBC count was 2.9. That was down a bit from last week's 3.2. Her neutrophils were also down a bit to 770 from last week's 900. Her platelets were up to 124 from last week's 110. All-in-all the doctor seemed happy.

They believe Jackie's bone/muscle pain may be GvHD. It seems it is possible to have GvHD present in the muscle tissues. They performed an enzyme test and found nothing abnormal. They will continue to monitor the situation. They want her to continue to decrease her Cyclosporine. If the pain becomes worse they may require a muscle biopsy or additional immunosuppression. We learned from the nurse coordinator that GvHD will always be a possibility. She said that they have seen flare-ups even 5 years after transplant. This can happen if the new immune system comes under stress. For example, they sometimes see flare-ups if a patient develops pneumonia.

Jackie had a good today. She felt good today with very little pain. She also ate well. The doctor is a bit worried about the continued weight loss. She has lost almost 70 pounds. During the last month she has lost an additional 10 pounds. They suggested she might want to take some appetite enhancing drugs. We both laughed. They were serious. If the weight loss continues, she will likely take pills that cause her to become hungry. Go figure!

The best news of the day was that the doctor's feel she is doing well enough that she will not need to return to the Mayo Clinic for 2 months. Of course if her situation changes we will come back immediately.

Until Later...

Bruce and Jackie
From the Mayo, Rochester, MN

PS. We have to come home. Jackie forgot to put the suitcase by the door in Pryor. We arrived in Rochester with NO clothes. The first thing we did was go shopping.

Monday +145 (Evening)

Just a quick update. Jackie continues to have a lot of nausea and bone/muscle pain. The reason is unknown. She has had a couple of instances of vomiting. This is the first time she has been this sick in quite some time. The pain and nausea is well controlled by use of Oxycodone but she is hesitant to use it. She is afraid she will become reliant upon the strong pain meds.

The kids were all home for the Labor Day weekend and this seemed to help. We will be returning to the Mayo Clinic at the end of this week for another checkup. This is the first return visit in 5 weeks.

Jackie continues to taper her Cyclosporine levels. We are hoping she will not experience any GvHD as the taper continues. The current level is 175 mg. Just prior to transplant she was taking about 900 mg per day.

Until later...

Bruce and Jackie
From Pryor