Weekly Update 10/22

Dear Fods,

Thank you for continuing to post against the old news. It has been another very busy week for Debbie and her support team. Debbie had a Monday, Wednesday and Friday run to the HUP this week again. Fod Edie covered Monday and Wednesday and saw the HUP at their best and Debbie at her worst. Monday was a full day's event while Wednesday was only a 7 hour event. Debbie was so sick on Wednesday that the Lab team took over the meds and made some very sound recommendations and changes that seem to have helped Debbie's nausea and appetite. Fod Kris handled the drive on Friday and again they made it in under 8 hours.

Regarding the drug fiasco, because of the graft failure, we questioned the need to take the anti-rejection drug tacrolimus, which is very hard on the kidneys -- but were told that it was necessary. Well, hours after the last post, HUP called and told us to STOP the tac because Debbie's levels were way too high. She was at 50 and normal is 10! So we stopped the tac and her tremors ended a few days later. This week they told us to stop taking the magnesium oxide because that is only necessary if you are taking the tacrolimus as it facilitates the absorption of the anti-rejection drug! So there was 10 days of taking something that was not needed. On Wednesday, while Debbie was heaving up a storm in the lab, they asked her why whe was taking Zofran? Because it is an anti-nausea Deb says -- they say yes it is, but only if you are on a chemo regime -- if you are not getting chemo, it will make you sick!@@!?? List price for that drug was $4,000! They gave her adavan pills instead and that seems to be working much better for her nausea. Yesterday, I went to fill the rest of the new prescriptions and one CVS did not carry the specialty drug and told us where to go to get it. That CVS looked at the new scripts and said that they would not even fill the order because there is a very serious drug interaction between the four new scripts! They have to speak with Porter himself before they will dispense it to make sure HUP knows what will happen if Debbie takes it with the other drugs!@@!! Finally, Debbie is wearing fentanyl patches for pain management. Three boxes were dispensed with 5 systems in each @ list price of $800. On Friday, HUP decides to reduce the dosage from 2 patches @ 75 mcg = 150 mcg to a 100 mcg dosage. Of course, we cannot use some combination of the 75 mcg patches of which we have 2 full boxes, or even 75 instead of 100 over 2 days instead of 100 over 3 days?? -- we need new boxes of 100 mcg patches! And you wonder about the cost of healthcare?

Debbie is weaning herself off of the pain narcotics, her back pain is improving and she is taking small slow walks around the block twice a day. Debbie usually takes one of these jaunts and is ready for her bed. She is still sleeping 14-18 hours a day, she is very weak and needs the O2 at the slightest exertion. Trying to convince Debbie to eat now reminds me of Jester trying to get Christian to eat. It takes longer to convince her that she needs to eat, then to make a selection of what is there to eat then it takes for her to eat the small portion of whatever she does finally select and agree to eat. We made pizzas for the game yesterday and she did eat a few slices and she was able to cheer for the Irish win.

Debbie is slowly improving and her growing impatience with her slow progress further suggests to me that she is getting better. She wants to do more, but just can't which, in my view, is the improvement. For the first 2 weeks she did not want to do anything at all because of the back pain. Last night, she wanted to know who took care of her during the first 10 days she was home -- which underscores my point.

Monday will be the her 21st day home and I think she will be much better in another 21 days as soon as we get all of these drugs sorted out and her appetite improves. Today's objective is to get a recumbant bike for her to ride in the family room because it will be too cold for her to go outside soon.

Thanks for all of your well wishes and your continuing posts. We all feel your love and support.

Debbie sends her love to all.