Week and Weak

It’s been a week at home and I’m learning how weak a month in hospital can make you!

The first week at home has been great and I‘m enjoying all the comforts of home and the freedom of the bigger space. I’ve even gone solo on a couple of walks and driving the car too!

Being weak in the legs was a bigger thing than I expected. It’s really noticeable on the stairs and squatting down and then trying to get back up is really hard without a little push or pull to get going. Seems like it will take some time to build back up.

I may be out of the hospital but the week was not without a couple of return visits. First up was Oncology/Hematology and then later in the week was Dr Gingerich at the Pain Management Clinic.

Monday’s oncology/hematology appointment was to review the blood work which resulted in some additional medications. As the numbers continue a slow slide in the wrong direction, the decision is made to give my immune system a bit of help with some Grastofil injections twice a week. A bit of Deja vu as I’ve done the same injections back in 2018 with the first go round with chemotherapy.

The next medication is IVIG, again something I recently had in hospital and back in 2018 with the first treatment of the lymphoma. Since this is administered via IV it’s a trip to the hospital for several hours as IVIG is slowly administered to watch for any side effects. If there are no issues the infusion rate is increased every 15 minutes. The primary goal with IVIG is to increase my platelet count which helps to manage blood clotting and helps my overall immune system as well.

The Thursday appointment at the pain management clinic went well. My pain is well controlled now at a 0-1 on a scale of 0-10 so that is a tremendous improvement. The plan is to maintain the current level of Fentanyl for two weeks and then start a very slow downward taper and see how that goes.

Next week on August 2nd it’s a visit with my GP. The hospital set this up when I was discharged to bring him up to speed on everything that’s happened during my hospital stay.

Speaking of what happened during my hospital stay, I managed to get some additional infections probably due to my low blood counts, my almost non-existent immune system and the proximity to the perianal abscess/fistulas which is not exactly a sterile area. This resulted in the wound care nurse specialist getting involved which lead to daily wound care to work towards clearing up these infections.

Once we left the hospital, Home Care nurses are providing the on-going wound care as well as the associated supplies. Shirley has been learning the wound care process both in hospital and from the home care nurses and has become quite proficient. At this point Shirley feels capable of looking after the wound care which makes the process much more manageable especially as we plan on going to the lake soon.

I’m happy to report that I’m doing so much better and we are looking forward to some lake time with our family!