- March 28, 2017 at 1:14 pm
Hi all! I just need to vent about a most frustrating day yesterday. Roy was scheduled for a port implantation Monday. I had called the doctor over the weekend to express concerns about the port implantation due to a very nasty cough and persistent low grade fever. They called in Cipro and he started it Saturday, We were told to go ahead and come in Monday. We arrived at 10am. After bloodwork, ekg, etc and other prep, I was able to go back to the surgery waiting area. I spoke to the doctor and anesthesiologist and again expressed my concerns. Fortunately, they did an x-ray which indicated penumonia and called a halt to the port. His doctor is right next door to the hospital so they sent us to him. After waiting for quite some time, the RNP saw us and sent us back to the hospital for another x-ray (different view). She said we could go home after the x-ray as they only needed it for comparison purposes in two weeks. Back at the hospital, they had not yet discharged him, but insisted on doing so and providing a new case # to do a 2nd x-ray, all of which took time. By the time we got home it was 4:30 pm. Poor Roy had not eaten since the previous night, and had spent almost 8 hours at the hospital and came home without the port and with his 2nd treatment of Yervoy/Opdivo delayed by at least a week, depending on what x-ray shows in 2 weeks. I stayed positive for him. but was fuming inside that he had to go through so much when he felt so awful. I know many of you have had days like this, probably far worse. I've got my big girl panties on but the elastic was dangerously close to snapping yesterday! Thanks for the ear! Prayers and hugs for you all!
- March 28, 2017 at 3:01 pm
Alison – I can totally commiserate! The care delivery system is seriously flawed and very little attention seems to be paid to how exhausting delays are to the patient. My husband has the patience of a saint….me, not so much. He often tells me that I have "angry eyes" when we're dealing with nonchalant medical professionals! Is a port necessary for the infusion? My husband has a port but I think we've seen other patients using a traditional IV. Hope the next procedure is a breeze!
- March 28, 2017 at 10:10 pm
Thank you, Ann! He got his very first infusion via traditional IV. While the port is not absolutely necessary, it does seem to make things easier on the patient in the long run. The poor man feels like a pin cushion. As I am sure you know, some people have a gift for "sticks" and some people do not. Every stick seemed to hurt him yesterday. If his pneumonia has resolved and he is able to go ahead with the 2nd infusion on the10th, he will do so, and then try to get port in place before 3rd infusion. I think you and I have more than a little in common. My husband is saintly too, so I get aggravated on his behalf, lol!
- March 28, 2017 at 3:31 pm
If he can do without the port I would do that. I've never had a port and I've never come accross another immunotherapy patient at the infusion clinic with one. I know some circumstances call for one, but it's a whole other hassle in and of itself. Sorry for your super frustrating day.. many of us have had those awful delayed and dissapointing days. Hope the next visit is much better.
- March 28, 2017 at 7:34 pm
Just to let you know…before I started my treatment, I asked about a port. They said one wasn't necessary for my infusions( Keytruda). The combo may different.
- March 28, 2017 at 9:14 pm
I've never even thought about a port, never needed one myself. Maybe getting the port is more trouble than it's worth? Plus, it's another area to cause possible infection and complications, always nice to minimize that when possible. But, if veins are tiny and not easy to stick a needle into, then having a port might be better than getting poked 10 times before getting a good vein. Thinking out loud here. Sorry for such a rough day Alison. We're always here to listen to some venting.
- March 28, 2017 at 8:48 pm
Sorry for the delays too. I guess what is worse is going through all the delays and then ending with no treatment – has happened to me a number of times so i kind of try to lower my expectations going in. Some of the delays seem unnecessary, others could reflect patients in difficulties ahead of our appointment. I take a book to read but its hard to focus. Know it is tough but hope you are both recovered and ok now, and good luck next visit!
- March 28, 2017 at 10:15 pm
Thank you all for your sympathy and understanding! I know that there are undoubtedly those who had worse days. I will try hard to keep it all in perspective. My heart just breaks for him sometimes. He's the kindest most tolerant person I have ever known, and rarely grumpy, so when the nurse asked him how he was doing and he replied with "I have cancer and pneumonia and I'm seventy years old" I KNEW it was getting to him.
- March 29, 2017 at 9:09 pm
Due to my CLND, my right arm is not an option for blood draws or IV needles. That means everything has to be done in the left arm. All the IV's and blood draws over the last year and a half has made me a tough stick. I finally got my port last month and it is wonderful. There is little to no risk for infection as it is completely under the skin. It doesn't sound like you guys have been having fun trying to get one, but it will be totally worth it. I wish I would have gotten one sooner.
Best of luck,
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