I haven’t posted a personal update in a minute. Part of it is because I’m extremely worn & frustrated & I don’t want that to bleed out and be perceived as whiny. I know it couldn’t be farther from the truth & it’s not, but still this is what my head tells me sometimes.
Even though I constantly tell other friends with transplants who feel similarly that they are doing anything but.
While rather lengthy this update encapsulates a few months of frustrating experiences which I felt important to share with others.
I did recover from my rapamune sensitivity reaction which I feel very fortunate that I did. When they did a scan in December, they found some Tuberous Sclerosis Complex tumors that needed addressing.
In January, I met with a urologist to plan a procedure for April 4 to have one of those tumors removed.
Then around March 15, some fresh hell broke loose. I spiked a fever & went to my local ER after my transplant team told me to go. I ended up being admitted with neutropenia (low white count). Transplant patients white counts are usually around 4-6, a healthy person’s are 6-10. Mine was less than 2.
They didn’t have a bed at my center so I spent the overnight at my local hospital then they transferred me down.
The following Tuesday they let me out after working me up & making sure the pain I was having in my back (flank) area wasn’t a kidney stone or bleed or something of concern. But I wasn’t on my normal transplant floor for this hospitalization & I think that caused some issues.
The care was good up until the point I mentioned that if I couldn’t be discharged in time to beat the storm, I’d need a bridge supply of medicine and to make arrangements to stay at one of the transplant houses.
I told my day shift nurse for two days that I wanted to speak with social work regarding this.
No social worker came. Social work’s role is in discharge planning. I should have had one helping me when I requested.
That floor put everything on me, my caregiver, and transplant doc, which should not have happened. My nurse (while her medical care was outstanding) lacked empathy for my concerns about the weather and being stranded or stranding someone else.
The discharge was a nightmare. Even after my transplant doc made calls to make arrangements for me to stay at the transplant house (which he shouldn’t have had to do though I appreciate him doing), it still took 4 hours for pharmacy to bring me a 5 day supply of medicines.
Meanwhile the Friday before this, I called the urology department. I was supposed to have my pre-surgical testing visit with the urology Nurse Practitioner (NP) & the pre-surgical testing department. I cancelled that because I didn’t want to be billed as a no show.
I told them I was in the hospital but wasn’t going to be discharged in time to make that appointment and would call after I was discharged to reschedule. I made it clear I couldn’t move the surgery.
The Monday after I was released I stopped up to the urology department then before my transplant follow up appointment because I had made 3 calls to ask about rescheduling the pre-surgical testing & NP visit. I’d gotten no replies but a “we are working on it”.
It was a good thing I stopped but I was completely flabbergasted at what happened when I did.
The scheduling coordinator that helped me that day said I wasn’t on the schedule anymore. She finally figured out why.
The office manager had cancelled my surgery!
I explained that I had this scheduled since January and that I had all my arrangements set. I had family coming from 1500 miles away. I explained that I was having some annoying symptoms but didn’t want them becoming unmanageable.
The scheduling coordinator did what she could to help but could not get me rebooked for my original date. Because of this storm and a few others the doctor was already overbooked too much by that date.
The soonest she could offer me was the 25th of April, which became available because of the snowstorms.
Luckily for her the office manager that did this was out that day so I couldn’t lay into her.
After my surgery is done, I do plan on filing a formal complaint because it’s unconscionable that I was never told this & wouldn’t have been had I not stopped in to the department.
When I went back that week for the pre-surgical visit, I was cleared by the NP and told I only needed to stop down to pre-surgical testing for one vial of blood.
Even though I had an appointment, I was told by pre-surgical testing that I had to wait. They gave me a pager and sent me to another waiting area and told it would be up to 45 minutes. About a half an hour later, my pager went off and I returned to the department. I waited another 20 minutes in the tiny waiting area there with no explanations as to the delay.
Then the tech takes a look at my orders & says she’s going to do an EKG. I told her I had one done recently that that the NP said I didn’t need it. She insisted on doing it anyway & then wondered why my heart rate was through the roof. She then took forever to draw that vial and then told me I couldn’t leave until she called downstairs about the high heart rate. Finally, I left.
But like the day I found out my surgery was cancelled I was shaking. I tried my normal strategies to fight the panic & anxiety, but I couldn’t take the edge off. Even my rescue medicine seemed to be taking longer to work.
I do not get these reactions when having tests locally or when transplant sends me for them.
It’s only these outside departments, & I truly feel because I feel a direct threat of harm when these experiences occur.
As far as urology is concerned, that staff undermined my faith in my doctor, even though he isn’t the issue at all.
I am not sure after this procedure that I can stand to deal with his office again. Which is a shame, because this doctor has good bedside manner, great skill & expertise with my diseases.
It also makes me nervous that after this is done, I have a kidney issue that needs to be addressed and I’m concerned if I’m going to have issues scheduling that.
Delaying this surgery also sets back the time table on scheduling this too because I can’t do anything until I’m recovered from this other procedure.
I don’t have the luxury of firing doctors like I once had because of my transplant status and diseases. Some places won’t touch me.
I also wanted these procedures done here because it’s the hospital where I had my transplant, all my records are there and my team is there in the event of a problem.
But it’s a huge problem when I feel like the only team I can trust there is my transplant team.
I do massive amounts of coordinating my care & have for years (lest anyone think there’s a mountain out of a molehill) — but I’m worn down from this.
Everyone has their breaking point, & this is a quandary I’m going to have to sort out in the near future with my healthcare decisions & it’s not one that will be easy.