Janet Siettmann Janetslongwindingroad

First post: Dec 15, 2018
UPDATE 12-13-2018

Janet is now home!!!!

She was released from the hospital yesterday (12/12/2018)

Any cards or other things sent to her at the hospital  will be forwarded to her apartment by the hospital so no need to worry if she's going to get them or not.

She said it was really nice sleeping in her our place and bed last night. She enjoyed being able to adjust a nice pillow and the darkness and quite of the apartment.

Her platelet counts are still at about 30k and she still has 2 more  Rituxan treatments, one this Friday the 14th and next Friday the 21st and lots of follow up appointments.

Thanks for all your love and support, thoughts and prayers.


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Janet is doing well but getting tired of her stay on 27th & Oklahoma!! As many of you know she came in on 10-16-18 and was a direct admit from the ER to the ICU with chest pressure & shortness of breath. Soon it was determined that she had two small heart attacks in a 2 week window. The plan was to get her stable and onto surgery. Unfortunately her kidneys got mad and she needed two rounds of dialysis. Thankfully on 10-23-18 she was able to have her triple bypass surgery. This was a very scary time for everyone but she mustered through once again!  A week later she was transferred to rehab where quickly rallied! Within days of transferring her though we learned that she developed antibodies from the IV heparin that she received pre-operatively. This was called "heparin induced thrombocytopenia" or also known as HIT! A special IV drip was started and the thought was that she would respond within several days. Being the typically Siettmann that she is, things didn't go as planned! The working theory is that she a component of ITP or idiopathic thrombocytopenia purpura was getting in her way!  She spent 4 lovely weeks in rehab making new friends with OT & PT. She even started "art therapy". Despite all efforts, the chronic nature of ITP is stronger than her will and our wishes. Typically a patient can go home with ITP with platelet counts in her range. Unfortunately they can't get her off the IV treatment for Mr. HIT without a platelet count of 140,000. Those of you that have any medical background would know that patients go home with platelet counts less than 20,000 all the time! In Janet's case they are adjusting her IV dose every other day almost to keep her PTT therapeutic.  Its kindof like trying to grow grass while your neighbor throws weed killer down! The doctors tried a 4 days of dexamethasone & then 4 days of high dose prednisone followed by a taper. This made her all shades of happy!

So, in an effort to rule other blood disorders out she bought herself a bone marrow biopsy the last week of November! This proved that she did have HIT and thankfully no blood cancers!   She was then moved to the 12th floor Oncology unit  (southern exposure) where she received her first of 4 doses of IV Rituxan on November 30th.  Thankfully no "reactions" that would typically be seen in a leukemic with tumor burden. The reality is that this is trial and error, just like trying to grow grass in the shade! If Rituxan works, the average timeframe is 14 days to 56 days... hmmm!!! She and her young Dr. Pant who is her blood doctor decided to try IVIG (an immunoglobulin) to try and fast track things a bit. For this one we are looking at 4 to 7 days for a response (while still getting that Rituxan). Her 3rd dose of Rituxan will be 12-14-18.

Needless to say, her kidneys are hanging in there but the nephrologist has her on strict fluid restraints! She is such a trooper! I would be in tears much more often having gone through all that she has! She struggles with a dry mouth & fatigue brought on by anemia from poor kidneys & diabetes. She is chewing lots of spearmint gum and taking cat naps but can't wait to get the HELL out of here!  We have recruited a massage therapist to give her mini massages and she calls them her spa days!  Art therapy still visits and we are planning on an "Ugly Sweater" party tomorrow with the patients on 12! More to come!