Share. Connect. Love.

Posted 2019-08-30T04:25:58Z

Aug 29, 10:46 pm

Day 1360 of the transplant cycle.  I must admit that I have let down on the job of updating the posts.  My apologies, but time seems to get away from me.  We did go to Houston on August 14th and 15th to have the stitch removed from Steve's right eye and have him fitted for a new set of PROSE Lenses.  For that trip we stayed in a hotel close to the eye center.  Unfortunately there was a bad storm on the night of the 14th which caused a 'brown out'.  Now I have never experienced a brown so who knew that the water system was powered by a pump and that the water and toilets would not work?!  I would have expected the lights, cable and internet to be down which, of course, they were.  The lights were at 50%, but the cable and internet were definitely down.  That lasted about 8 hours.  Thus is the excuse that I am going with for not updating on our last visit.  As for the visit, it went well.  Steve's eyes are much clearer and less light sensitive without the cataracts.  We were hoping for the new PROSE Lenses to be sent to us by now, but we are still waiting on them.  Hopefully in the next day or two.  With the new lenses Steve should be able to see even better than before his diagnosis.  [...]

Posted 2019-07-31T04:35:35Z

Jul 30, 11:16 pm

Day 1330 of the transplant cycle.  The post op visit on Friday went well, meaning that the eye looked good and the vision was a little better, but will continue to improve as it heals.  The stitch will be removed on our next visit mid August.  The weekend was restful, Steve was able to nap and keep his feet elevated to alleviate the edema.  A quick note about Steve's edema, his skin no longer has the raised red bumps, it is actually quite dry and flakey now with the added issue of raised clear blisters that randomly appear.  In fact, we have issues with them developing under his dressing for his chest tube.  I sometimes think that we are in an episode of House and they haven't found the right diagnosis yet!  [...]

Posted 2019-07-26T03:30:36Z

Jul 25, 10:16 pm

Day 1325 of the transplant cycle.  So the left cataract surgery was a success! Steve spent most of the day resting.  He has the post op appointment tomorrow morning and then the rest of the weekend we are planning to rest and keep Steve out of the bright sunlight.  In fact, I think that it is supposed to rain here for most of the weekend.  Monday we will meet with the PROSE doctor and then head home.  [...]

Posted 2019-07-25T03:26:20Z

Jul 24, 10:09 pm

Day 1324 of the transplant cycle.  Time flies, it is time for Steve's cataract surgery on the left eye.  We drove to Houston yesterday and today Steve had his pre-op visit.  His right eye has done great and Steve can't wait to get the left eye done so he can get his PROSE lenses adjusted and he can see again!  During the pre-op visit today, they also tested his right eye with corrective lenses and in his right eye he was able to see 20/20!  That was awesome!  [...]

Posted 2019-07-09T05:02:24Z

Jul 8, 11:30 pm

Day 1308 of the transplant cycle.  Well it is time again, we drove down to Houston yesterday.  What were we thinking, 4th of July weekend?! Most of the drive was bumper to bumper for hours and that was when we were moving!  But we did make it in one piece which, thank goodness!  Today, Steve had the stitch removed from his right eye from the cataract surgery.  The doctor said that his eye couldn't look any better.  So we are just waiting for the surgery for the left eye at the end of this month.  The only other appointments that he had today were the obligatory blood draw and the follow-up with the GVHD Specialist and the Dermatologist.  Both were very happy with the look of Steve's skin.  No active GVHD, lots of coloration changes but they tell us that is his previous skin pigmentation coming back randomly which is Good News!  In fact they are so happy that we don't have another follow-up for 2 1/2 months.  The GVHD Specialist did lower Steve's steroid dosage to 5 milligram 7 days a week instead of alternating 5 and 10 milligrams during the week. [...]

Posted 2019-06-07T02:09:20Z

Jun 6, 8:41 pm

Day 1276 of the transplant cycle.  I have been delinquent in my duties to update the care pages here.  In a quick recap.  We came to Houston this week on Tuesday after Steve had his photopheresis appointment in Dallas.  This is the first time in a long time but they wanted to give him red blood cells since his count was somewhat down.  So our departure for Houston wasn't until late in the afternoon.  We finally made it to Houston around 10:00 pm and Steve had a surprise for me in that he booked an apartment for our stay this time.  As it turns out it is a highly secure building with a beautiful apartment on the 11th floor with floor to celling windows on one side of the living room.  And it has a balcony!  Since this visit was primarily for Steve's cataract surgery, the apartment is literally right down the street from the doctor and the surgical center.   Today was Steve's cataract surgery on his right eye.  It was really quick and successful!  Later in the afternoon, Steve had an appointment with cardiology to be fit for a heart monitor that he will wear for the next 48 hours.  They just want a baseline.  We have a post op appointment in the morning and then will be headed home.  Steve's seems to be doing well with everything right now and there is quite a bit; fluctuating (diminished) eye sight, extremely dry skin, chest tube, oxygen machine and heart monitor and let's throw in the walking cane just for good measure!  His left eye cataract surgery is not scheduled until the end of July, however we will be back to Houston the first part of July for Stem Cell and Cardiology follow-up appointments.  Since his SATs have been doing well, we hope that he will be able to ditch the oxygen machine at that time.  We will see.[...]

Posted 2019-05-17T02:29:10Z

May 16, 9:04 pm

Day 1255 of the transplant cycle.  A quick recap of yesterday, Steve had his second session of photopheresis which tends to make him pretty tired these days so we used a wheel chair for most of the other appointments of the day.  The appointment with ophthalmology was to get cleared for cataract surgery. Steve is tentatively scheduled for cataract surgery for one eye in early June, the other eye in mid July and a follow-up in August.  Sounds like a busy summer already! The final appointment of the day was with cardiology (actually a PA in cardiology).  It seems that we can never see a actual doctor in that department.  At any rate, the PA wants to start Steve back on the blood pressure medication primarily for the heart rate, not for high blood pressure.  She wants him to start on a very low dose and only at night before he goes to bed so it will not affect his blood pressure and mobility.  Steve is to keep a log of his blood pressure and heart rate while taking this low dose of medication.  The PA waited until we were an hour out of Houston today to call us and suggest that we come back and pick up a heart monitor for Steve to wear for about 30 days.  We decline to return and so she is going to send it to us.  Steve is less excited about carting around a heart monitor in addition to his oxygen everywhere he goes!  The bronchoscopy rounded out our visit this morning, I will say that I had completely loaded the car yesterday before the hotel finally called me and told me that they could let us stay another night.  So I got to unload the car again so we could stay and have his procedure done this morning.   I can't say that I don't get some random exercise in here and there!  At any rate, Steve's bronchoscopy went off without a problem and they even got us in and out earlier than expected.  So we made the drive home and just finished today's chest tube drain.  Looking forward to sleeping in our own bed again![...]

Posted 2019-05-15T14:30:04Z

May 15, 9:06 am

Day 1254 of the transplant cycle.  Yesterday was a pretty busy day too.  Steve had the knee x-ray done, but we haven't heard any results from that yet.  He started photopheresis again.  We did find out right before the session that the nasal wash indicated that Steve has Parainfluenza which is a common virus that can cause both upper and lower respiratory infections, including colds, bronchitis, croup, and pneumonia. Despite it's name, it is not related to the flu.  It does, however, mean that they quarantine Steve from the other patients in the photopheresis area.  So we didn't get the 'closet' yesterday, but the room (and I use that term loosely) was only a slight step up from the closet.  The other appointments for the day included Infectious Disease which just wanted to do another bronchoscopy to insure that the parainfluenza virus is the only thing going on in Steve's lungs and then there was the appointment with cardiopulmonary who confirmed that Steve's PFT was much better than his last and although he does have this parainfluenza virus going on overall his lungs look pretty good.  Cardiopulmonary did concur that it is protocol to do another bronchoscopy to ensure that there isn't any other infection in the lungs so they have scheduled one for Thursday morning which might be problematic since for some reason I only scheduled the hotel through today and it seems to be booked for the rest of the week.  Obviously I was not at the top of my planning game!  [...]

Posted 2019-05-14T14:43:57Z

May 14, 9:14 am

Day 1253 of the transplant cycle.  I am finally connected!!!! We stay in the hotel connected to the hospital while we are here and have been for going on 4 years now and each time we stay it seems to get harder and harder to connect to a WIFI signal that is available and consistent in the evenings.  Too many people streaming movies, I think! At any rate, let me give a quick update this morning before our day gets into full swing.  Steve had a full day of tests yesterday, CT scan of his chest, chest x-ray, PFT, nasal wash, throat culture and the obligatory blood draw.  The one doctor's appointment yesterday was with the GVHD Specialist who always seems to bring the Dermatologist with him for Steve's persistent GVHD of the skin.  We don't have the in depth results of all of the tests yet but I will relay what we know so far...… for the most part the blood work was good, potassium was elevated and so was his immune suppression drug.  The x-ray and the CT scan showed more nodules in the upper lung(s) which may indicate a viral infection that is going around that presents like a cold, stuffiness, congestion and a cough, thus the nasal wash and the throat culture. We should know the results of those today. Steve did better at this PFT (pulmonary function test) than he did at the last one in mid March when he had quite a bit of fluid around his lungs.  [...]

Posted 2019-05-13T03:09:26Z

May 12, 9:53 pm

Day 1251 of the transplant cycle.  First of all, let me wish all of the mothers a Very Happy Mother's Day!  I had the pleasure of having both of my boys home for a couple of days before the weekend for an early Mother's Day.  Having the family together for a couple of days was wonderful!  [...]