If only?

[Eyak1971]

Saw this today and had to share it. We may have all been in the same dire situation but we have all wished it would happen. Please share it with your doctors if your are brave enough.huffpost.com/entry/rare-dis...

[Jayhawker]

wow! Thanks for sharing this with us!!!

Jayhawker

[drmind]

Wow, but even if you speak up, sometimes none of them listen.

[Eyak1971 in reply to drmind]

Our doctors are so important but few are good communicators particularly those in specialized fields which is probably why I spend more time talking to nurses.

[Jayhawker in reply to drmind]

Exactly

[Mandelin in reply to drmind]

I have one of the best doctors there is. He is my urologist and I’ve had him for many years. He answers all my questions even if they don’t pertain to his specialty. I figure he’s my age 61 and has a few more years before I could possibly lose him, but lo and behold they promoted him. He may still see patients at times but not guaranteed. 😞

[Eyak1971 in reply to Mandelin]

The concept of a family doctorvis going by the wayside. More young doctors are specializing. Would recommend articles or books by Peter attia. Emphasizes doctor interventions before disease. Going to a doctor when you are healthy so you stop illness before it becomes an issue and costly. I wish I had read him when I was in my 30s not my 70s. Learning about health should be taught more intensively in school from k through 12 snd beyond. It would lower health costs dramatically and be big savings for business and the government and turn around the rise in obesity and related illnesses. Knowledge is powerful. That is truly what doctors should do. They should be educators for their patients and should be regarded accordingly.

[Mandelin in reply to Eyak1971]

I’ve kinda known about my kidneys since I was 20. I’m now 60. I had kidney stones and one of my kidneys was only working 50%. I’ve been seeing this urologist for about 14 years when my husband’s dad had kidney cancer. I took care of myself most of my life but my other kidney started failing 8 years ago. My kidney issues were hereditary and I held it off as long as I could. I received a transplant a year ago this month. What I’m seeing now is they want to put you with CNP’s. I think they need to make the CNP’s finish their education to become doctors. No CNP is going to have the knowledge my doctor has since he is a surgeon and has done transplants in the past.

[Eyak1971 in reply to Mandelin]

I totally understand your frustration. There seems to be always a doctors shortage. It may be do to the high cost of education. In the long run the medical field is doing what they are doing in education short tracking to fill positions. It needs to change but no one in position to do so is doing it fast enough. I guess this why technology is so important. The more technology in medical care the more time doctors can spend with patients. I always appreciate a doctor who pulls out a body chart and explains things. I am a visual learner. Once I see how things work that knowledge gives me control. People often say fo not use Google for Healthcare but I find it gives you a starting point to understand your health problem and forums like this one are priceless. The reality of your illness can be hard but sometimes you just want to know . For me I am constantly going through denial to anger to pleading to acceptance. And then back again. Its the process of dealing with serious life problems. That is why you need support from all involved from family to professionals. May you find all the support you need and more.

[Jayhawker in reply to Eyak1971]

In addition to what you’ve shared, I’d add that doctors need to communicate with one another much more effectively.

I’ve had my hands full trying to get my transplant nephrologist talking to and working with the infectious disease specialist she sent me to earlier this year.

I was diagnosed with T-LGL leukemia in early December. I chose to go to the competing hospital for my cancer care primarily due to their national reputation with cancer treatment.

One of the unexpected benefits of this decision is the much better communication between doctors across two different hospitals . In short, my transplant center doc is listening to and working with my hematology oncologist. What a difference that has made!!!

My oncologist has emphasized in his communication with the transplant center that my renal data makes perfect sense when looked at through the T-LGL leukemia lens. He was definitive that the transplant is working very well and stable. Frankly, that has been abundantly clear to me throughout this prolonged nightmare.

So, just yesterday I asked the transplant center to reschedule my appointment. They’ve pulled me in for endless appointments over the 15 months post transplant. For the past 6 months many of these have been unnecessary. The transplant center agreed to reschedule the appointment. I won’t go in until April 5th now. Yeah!!! Plus they are finally pulling back on the endless labs they have been running. Many of these labs have been unnecessary given how stable my renal data has been.

So, only 2 labs in February, 1 lab in March sand 1 lab in April. Yeah!!

Hopefully we’ll finally talk about turning my care over to my regular nephrologist in my April appointment. I can’t wait to get back to him. He is excellent. He has transplant center experience. In my view he is much better than the transplant center nephrologists I’ve seen for the past 15 months.

Well, it’s been a real struggle working with the docs in the transplant center. However, I’m hopeful that the end is in sight. Seeing them once a year while I’m under ongoing care with my regular nephrologist will be very workable comparatively speaking! And, this notable shift in the transplant center related to my case all tracks back to my new hematology oncologist who is very good and has stepped in to get this all calmed down. What a blessing he has been!!!

Jayhawker

[Eyak1971 in reply to Jayhawker]

Thank you for sharing your story as upsetting as it was. Medical care like many things in our society operates illogical at times. Sometimes I think it is due to stubbornness and money. We have alway done it that way and it is profitable. Sharing is a theory that seems childish to some even for the good of the patient. I know what I am doing so do not question me. It is great when you get a doctor to is willing to listen to patients and other doctors without prejudice. They have the communication technology but fail to use them. Everytimevi get a new medication from one I have to message all my doctors. The same is true with treatment plans. And when you ask for suggestions of good doctors to see for another problem you get a "huh?" Even my primary doctor is out of the loop. A body is made up of many parts that have one function as one unit through its own system of communication. Our health system also has many parts but lacks a system of communication. But it really has one today and chooses not to use it.

[Jayhawker]

I suspect we each have strategies we use to communicate with our physicians. Generally I have pretty good experiences with doctors and have been able to facilitate effective care. However, the transplant center has clearly been functioning in crisis mode since they lost over half their physicians the summer of 2022. They haven’t replaced any of them.

I just reviewed their annual SRTR report data posted January 2024. Their one year patient and graft survival rate has deteriorated significantly over the past 2 years. When I listed with them January 2020 their outcome data was equal to or better than that of the other transplant centers throughout the region. That is certainly no longer the case. Their data now falls well below the national norm.

Obviously my experiences with this center are not uncommon. So, my goal has been to get transferred back to my regular nephrologist for ongoing care. He’ll communicate with the transplant center effectively when needed. Once a year appointments will be tolerable with the transplant center. Plus I’ll have a nephrologist overseeing my care who knows what he’s doing and collaborates effectively and willingly with all my other doctors.

Jayhawker

[Eyak1971]

Again thank you for sharing your story and the recent positive turns.