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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.  

Now on to our last visit to Houston which we just returned from today.  Steve had appointments with cardiopulmonary and his GVHD doctor.  The visit with cardiopulmonary was confusing at best.  The PA wanted to remove the chest tube but once we brought her up to speed on the amount of fluid that we are still draining, she told us that she with confer with the doctor and get back with us.  Of course, she hasn't yet.  The other point that we seemed to be out of synch on is that once we go to every other day draining (which is what we have been at for a while now), if the fluid level is above 150 ml, then we are supposed to return to a daily drain until we get three consecutive drains of 150 ml or below.  Not sure that Steve and I agree with this protocol since given his history of drains we will be doing daily drains again pretty much all the time.  We will try it and see what happens, but I think it will be daily drains for a while now.  I should also mention that Steve did a chest x-ray and a PFT.  The chest x-ray looked pretty good, fluid level was low.  His capacity seems to be constricted by his diaphragm on one side, but they are not concerned.  His PFT was pretty much on par with his past PFT back in July.  We wouldn't expect it to be much different since he has not done many of the respiratory therapy classes yet to help improve his strength or stamina.  Hoping this will improve as he goes to more classes.

The appointment with the GVHD Specialist went fine.  He is 'happy' with Steve's skin.  No active GVHD raised red bumps.  So he is prescribing photopheresis from twice a week to twice a week every other week.  This should help our schedule since we were going to photopheresis in Dallas on Mondays and Wednesdays and Plano on Tuesdays and Thursdays for respiratory therapy.  I will add that although Steve doesn't have any active GVHD, he still has chronic dry, peeling and scaly skin which due to the edema sometimes blisters making activity painful for him.  The doctor did finally admit that the edema, blistering, scaly and sensitivity in his feet will probably not go away.  That part will more than likely be something that he will always have to live with.  So we are looking at alternative treatments to help make that more bearable for him.  

On a final note, unfortunately Steve had a 'bad episode' last night which left him exhausted and weak.  It was difficult for him to get ready for us to come home today.  It is interesting that the doctor refuses to believe that Steve's episodes are related to GVHD.  He believes that they are food related because he does not experience any fever with them.  We have diligently tracked his food and still cannot find a correlation between what or even when he eats and his episodes.  I think that this is something that we are going to have to pursue on our own.  

At this point the doctors are not expecting us back for six weeks.  Steve will continue his respiratory therapy and his new photopheresis schedule.  Looking forward to him getting stronger so he can ditch the oxygen machine!  

That's all that I have for now.  Hope everyone has a fun and safe Labor Day weekend!

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Comments (3)

  • Ashita

    Thanks for posting an update Susan, was thinking of you guys for the past few days and was gonna message you, so glad you posted !! Hope Steve is feeling better now and you are able to find some alernernate treatments for the scaling and sensitivity!! Hope you both have a relaxing long weekend.

    10 months ago · Reply
  • Lisa Moreland
    Lisa Moreland

    WOW, first "brown out" I've heard about this year.....sorry it happened to you two! It is interested about the episodes - agree, there's got to be a connection somewhere. Prayers for safe travels......glad to hear not scheduled to return for 6 weeks! You both need a break! I hope your weekend is low key, healing and restful!

    10 months ago · Reply
  • Pat Clancey
    Pat Clancey

    I hope he gets his strength back soon - the Big 10 football season is upon us. Keep hanging in there, you two!

    10 months ago · Reply